Sabrina F. - A Patient's Journey - Living with Cutaneous Lymphoma

summary
In this episode of Coffee and Community, host Holly Priebe speaks with Sabrina, a young adult living with cutaneous lymphoma. Sabrina shares her journey from misdiagnosis to advocacy, discussing the challenges she faced in navigating her diagnosis, treatment, and the importance of community support. She emphasizes the need for self-advocacy, the significance of finding a trusted physician, and the power of sharing experiences to inspire others. Sabrina's story is one of resilience, hope, and the drive to give back to the community that has supported her.

takeaways
Sabrina was misdiagnosed for six to seven years before receiving the correct diagnosis of cutaneous T-cell lymphoma.
Living with cutaneous lymphoma has taught Sabrina that it is a part of her but does not define her.
Sabrina faced significant challenges in accessing treatment, including long commutes and delays in care.
Family support has been crucial for Sabrina throughout her journey with lymphoma.
Sabrina emphasizes the importance of self-advocacy in navigating the healthcare system.
Finding a trusted physician is essential for managing chronic conditions like cutaneous lymphoma.
Sabrina encourages others to allow themselves to feel their emotions and not always be positive.
Community support has been vital for Sabrina, providing a space to share experiences and feelings.
Sabrina actively gives back to the cutaneous lymphoma community through advocacy and fundraising.
Sabrina believes everything happens for a reason and aims to inspire others facing similar challenges.

Chapters

00:00 Sabrina's Journey with Cutaneous Lymphoma
13:07 Navigating Treatment Challenges
22:23 Finding Community and Support
28:19 Advice for Newly Diagnosed Patients
32:47 The Importance of Advocacy and Giving Back

Coffee & Community: Cutaneous Lymphoma Conversations
Episode 2
May 2, 2025

★ Episode details: https://share.transistor.fm/s/8096a7ff

★ Additional episodes: http://www.clfoundation.org